Fatigue

[Skyegirl78]

I’m 4 months in with pcs. Just wondering how you would all describe the ‘fatigue’ you experience. I’ve never really felt tired as such., not really sleepy ..my body just feels weak and I feel a generally very ill all over... completely debilitating ?

[Skyegirl78]

Post concussion syndrome!

[Shon48]

I feel like that after an aneurysms was coiled and stented. I just have to lie down and rest as my head gets so heavy and the dizziness takes over 🤗🏴󠁧󠁢󠁳󠁣󠁴󠁿

[Nackapan]

I have been told by last neurologist pcsn and also b12 deficient. So not sure which or both.

I'm 8 months in. Fragile head

Pains now at the back especially when eating. Signals for vision wrong as feel like I'm in a goldfish bowl. Can't tolerate landline phone artificial light and noise sensitive. Headashes and migrains if do 'too much' yes fatigue nothing ice experienced before. Feels like bad fluck with moments of okayish.

Yesterday a 'better ' day out of 7. I cooked a chicken and made stock. Did some veg. 7 meals to freeze. Put some washing on the line. 5 minutes walk. Skull so tight on trying to sleep. Balance off today and vision down

So so weary from yesterday. Yes completely dibilitating. I'm just trying g to write down symptoms as seeing a neurologist next week. So hard to describe. Dont actually know what the damage is. Still having b12 injections which initially really helped. I'm sure still are but not as clear. So description of tiredness /fatigue. Every single thing a huge effort. Sometimes legs feel planted to spot but I can move

Vision ot tightness of cranial nerves make head feel heavy and sore when moving. Legs can suddenly feel very weak. Balance can change especially on small slope. My brain giving me dodgy messages. If I keep still it's better. Feel in a haze most of the time . Put of body feeling. Ears started buzzing again this am thrn unexpectedly fell asleep. That is new. Let's hope this all improves to get to function at an acceptable level to get our lives back.

[Hidden in reply to Nackapan]

Please watch the B12, had injections years ago but they gave me too many ( can cause permanent nerve damage), I ended up unable to feel my leg from the knee downwards and obviously struggled walking. I stopped having injections symptoms took months to clear up but am fine now. Just a warning.

[Wazza84]

Hiya Skyegirl78

I’m 7 years in since my brain haemorrhage and fatigue still pretty much rules my life.. Headways has done a survey on fatigue called “Brain Drain” if you didn’t already know 😁

headway.org.uk/news-and-cam...

[Feebie8]

Like I'm suffocating deep under water (pressure) with a weary confused misunderstanding of over stimulation to everything. Too many thoughts in my head bumping into each other, too much light burning my brain, the birds are too loud along with my heart beating in my ear, too many people forcing their presence on me...life constantly bombards signals that I misunderstand or can't process. My fatigue is an all consuming companion that wraps me up in more restrictions yet I don't understand the restriction at the time. I can't see it, I know it's got me but I don't know whats happening to me. It wrecks me emotionally and physically and it will probably be the end of me one day. I can't sleep it off, there's never enough sleep. Seven months in PCS and I still can't cope with it or recognise it.

[pinkvision]

Hi skyegirl, feeling for you, my first fatigue phase lasted 9 months, had a bit of relief and thought I was on the road to recovery then BANG, next phase lasted 5 months, then it gradually improved till now and I think I can manage it.

I found total rest was the key, just don't do anything and try not to watch TV or go online too much, stay in the dark and sleep, sleep, sleep.

[Futurecut]

Hi lass,

I'm 14 months post severe tbi and spinal injury now. Always pretty tired, often to the exclusion of all else. Bit dizzy, vertigo calmed thank f. Previously easy little things make me need 2 hours rest now. I don't sleep during the day but rest. I thought paralysis would be the issue to deal with but it turns out to be BI- that's what stops me doing fun things to counter the disability.

[WinB]

Hi Skye,

If I don't rest when it hits me I say a lot of wrong words and end up going to bed. Even if it's for a rest it helps me. I just lay there and think about what a funny Mum I had and keep happy thoughts. Hard but it helps see just mentioning my Mum brings a smile to my face. Just had lunch so it could be wind j/k. Find that Laughter helps and keep away from negative people as they mean well and want to tell you their problems and at this stage you need to think of You !!..Get well soon and Good luck XX Leave you with my stupid grin. I had a SAH followed by ventriculitis and was out for a while but woke up singing xx Go figure!!

[cat3]

It's the commonest symptom after a brain injury and 4 months is very early days. Your brain is still trying to heal, and its only means of communicating that is by attempting to shut out stimulus.

External wounds can be slow to heal and often leave scars despite our flesh being pretty tough stuff, but we protect a wound for as long as it needs knowing that aggravating it would prevent healing. But the brain is so much more complex & delicate, and healing is a complicated and often incomplete process taking months or years.

I'm 7 years post injury and still an Olympic sleeper but, with practice and management, I've (more or less) got the hang of pacing myself and being more forgiving about what I can & can't achieve each day.

Look on the Headway site for tips on managing your fatigue Sky, and give yourself much more time to heal and adapt. Best wishes, Cat x

[Hidden]

I do not feel tired as in I need sleep, it's more like all the energy is being sucked out of me and draining at 5000 times faster than before my heamorrage if trying to do anything which requires the minimum amount of physical effort. This leaves me an absolute mess and physical wreck at which point sleep is the best option as I hope to wake up free of this hell. Hope this helps I've been as honest as possible. I had a sah which was coiled January 2019.

[Miss_B_Haven]

butyoudontlooksick.com/arti...

One of the most difficult things is to have to be explaining to others all of the time.That in itself is draining. Please visit this site and if it fits you can then refer others to it and let them learn a little on their own.

I found that very helpful and when I no longer had to use a spoon to explain to people my spoon could be used elsewhere.

[Cose]

My son has PCS also and is always tired all the time. Nobody had told us that it might help to check your eyes for eye sight deviation often happens after a concussion . His tiredness is due to this as his brain is always overloading to compensate for his eyes. He is treated by neurooptomotrist and is a little more halfway in his treatments.

Good luck